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Asperger´s is interfering with medical treatment.

B

base283

Active Member
Hi All, Can some one help me?
I am a 56 year old American male living in Germany. I was diagnosed in 2013 here in Germany.

I am supposed to be undergoing some unrelated medical tests. The problem is, They make a plan or say they will do a certain procedure and try to do something else. When this happens, I have fear that they have me confused with someone else, that they just want me to be a patient forever, that they are out to get me. This throws me into a panic attack. I run away. Taking the iv out on my own and leaving before I go into a meltdown in a public place.

This is causing me problems. They are triggering me into the panic attacks. Panic that I will go into a meltdown. I feel it coming on and I know I must leave within a few minutes (maybe 3 minutes) or I will go into meltdown.

What can I do in Germany against this treatment. I don't want to complain, but they are terrifying me. My Aspie diagnosis is on the first page of my Medical history so they know.

Any help would be highly appreciated. Thank you all in advance.
Take care, base283
 
"The problem is, They make a plan or say they will do a certain procedure and try to do something else."

Is it possible that you haven't been informed of the scope of the procedures?
There may be multiple steps involved in the tests.

Can you give a specific example of a time when you expected one procedure
and something else altogether took place?
 
tree said:
"The problem is, They make a plan or say they will do a certain procedure and try to do something else."

Is it possible that you haven't been informed of the scope of the procedures?
There may be multiple steps involved in the tests.

Can you give a specific example of a time when you expected one procedure
and something else altogether took place?
Click to expand...
Yes, 6 days ago. I was to go for an MRI and they changed it to a CT in a different body part.
 
Hi Base283. Have you ever asked why they changed the procedure? You have a right to know that. Not sure how Germany is, but here I see all the time that the medical staff just does whatever without explanation or discussion and forget they are dealing with a person.
I remember getting to work one night and one of the day shift nurses came up to me and said one of the patients I would be getting was about to remove his iv and leave and was refusing to talk to anyone. I clocked in and went to that patient's room before getting my assignment or anything. I introduced myself, telling him I would be his nurse and asked that he give me 5 minutes before pulling his iv out and leaving. He was upset because he had come through the emergency room and all these tests were performed and then brought up here and no one has told him anything and he felt like he had been treated like something on an assembly line. All he needed was to be treated and talked to like a person - he didn't leave, by the way.
But my point is that people you are dealing with are just there to work and do their job and forget that you're a person. Not intentionally, I don't think, just that what they do, they do over and over and over and forget that the patient is worried and not used to this setting or whatever they are about to encounter. You do have a right to ask questions. You can ask why. You can ask for confirmation - you want to see the changed order from your doctor. Of course, there are some that may feel offended like you don't trust them to know what they're doing, so you need to do it in a nice way. :) You can say something like, you've never done this before and concerned and would it be possible to confirm the procedure.
Added - I have had that happen and told them I didn't understand why because my doctor specifically said this. So they called the doctor's office in front of me to confirm the change in tests.
 
Maybe there is a problem with communication because of language. I think its ok for you to ask them to take the extra time needed to make sure you understand the procedure and the reason for it. But besides that you need to remember they are professional doctors who know what they are doing and aren't 'out to get you'. The level of medical expertise in Germany is as good as anywhere. You are not dealing with Witch doctors in Borneo.
 
Judge said:
About all I can suggest is to start with going over Germany's Patients' Rights Act:

Germany: Patients’ Rights | Global Legal Monitor
Click to expand...

ok, I read that. It doesn't speak about my type of issue. It speaks about treatment errors of the doctor and the patients right to know. Not about making the treatment program accessible to affected persons. For instance, Asperger´s preventing me from getting tests done that I may need. But Thanks as it has given me more searchwords. I have language problems. Thank you and let me know if you find anything else.
Take care,
base283.
Pats said:
Hi Base283. Have you ever asked why they changed the procedure? You have a right to know that. Not sure how Germany is, but here I see all the time that the medical staff just does whatever without explanation or discussion and forget they are dealing with a person.
I remember getting to work one night and one of the day shift nurses came up to me and said one of the patients I would be getting was about to remove his iv and leave and was refusing to talk to anyone. I clocked in and went to that patient's room before getting my assignment or anything. I introduced myself, telling him I would be his nurse and asked that he give me 5 minutes before pulling his iv out and leaving. He was upset because he had come through the emergency room and all these tests were performed and then brought up here and no one has told him anything and he felt like he had been treated like something on an assembly line. All he needed was to be treated and talked to like a person - he didn't leave, by the way.
But my point is that people you are dealing with are just there to work and do their job and forget that you're a person. Not intentionally, I don't think, just that what they do, they do over and over and over and forget that the patient is worried and not used to this setting or whatever they are about to encounter. You do have a right to ask questions. You can ask why. You can ask for confirmation - you want to see the changed order from your doctor. Of course, there are some that may feel offended like you don't trust them to know what they're doing, so you need to do it in a nice way. :) You can say something like, you've never done this before and concerned and would it be possible to confirm the procedure.
Added - I have had that happen and told them I didn't understand why because my doctor specifically said this. So they called the doctor's office in front of me to confirm the change in tests.
Click to expand...

The scenario is that I was in an accident and and compressed some vertebrae. The doctors said they suspected that I had a carcinoma that was causing the vertebrae to fracture. I do not have a carcinoma. I had a type of crash that I am very familiar with. It was the impact that caused the compression fractures. There is no data to show that I have carcinoma. Nothing. They burned me with the first X-rays (quarter size burn that stayed for 6 weeks at the targeted skin area). So when they wanted to do a CT. I said no. I made it clear that I would not do this. No data to show that I have carcinoma, Already they burned me on just a simple X-Ray. CT was not going to happen unless there was data showing the need for it. So when I went for my normal tests, this order was written in the "to do" paper. "CT Lumbar, thoracic, cervical vertebra" with no reference to the test I went there for.
 
Tom said:
Maybe there is a problem with communication because of language. I think its ok for you to ask them to take the extra time needed to make sure you understand the procedure and the reason for it. But besides that you need to remember they are professional doctors who know what they are doing and aren't 'out to get you'. The level of medical expertise in Germany is as good as anywhere. You are not dealing with Witch doctors in Borneo.
Click to expand...

Hi Tom, Most all Doctors speak English here. The problem is, is that there is not much communication. Also, similar as you said (not implied), I am not an uneducated patient from a 3rd world country. My mother became a nurse when I was 11 or 12 years old. I had read most of her books before she finished the first book of the set and helped her train for the exams.
 
After you have explained more I understand your concern better. If possible then the best next step would be seek a second opinion. If that is not an option however I don't see the CT scan being a big problem. I've had them as well as many other type tests and a CT is a piece of cake. The radiation exposure negligible. Doctors do often try and eliminate possibilities, and perhaps there is something suggesting cancer that you aren't aware of. I've had cancer too and detecting it as soon as possible is always a good idea. In any rate, I don't see why you can't just let them do their test, hopefully eliminate that possibility and move onto the next step.
 
Tom said:
After you have explained more I understand your concern better. If possible then the best next step would be seek a second opinion. If that is not an option however I don't see the CT scan being a big problem. I've had them as well as many other type tests and a CT is a piece of cake. The radiation exposure negligible. Doctors do often try and eliminate possibilities, and perhaps there is something suggesting cancer that you aren't aware of. I've had cancer too and detecting it as soon as possible is always a good idea. In any rate, I don't see why you can't just let them do their test, hopefully eliminate that possibility and move onto the next step.
Click to expand...

I don't find that radiation burns are negligible. Although, I am not as susceptible as a younger person, Radiation is a cause of cancer. I am not aware of anything that is suggesting a cancer, and my test results show no change in my condition for over 2 years. Tumor markers are all ok except after the X-ray burn, it doubled but it is back to my normal now. The doctors say they suspect. I need more than a suspicion. I need data. But, that is not what I am on about. It is about the doctors sending me into a near meltdown that results in a panic disorder as a remedy. Again and again.
 
base283 said:
Is it possible to send you a private message?
Click to expand...
If it's personal, it's okay. I do agree with @Tom that doctors know what they are doing and if they feel they have reason to look for something, it may be worth checking into. You don't want to regret later not checking. And a second opinion would be a good consideration if you don't trust your doctor.
But your concerns need to be addressed by your doctor before ordering tests you specifically said you don't want.
 
Pats said:
If it's personal, it's okay. I do agree with @Tom that doctors know what they are doing and if they feel they have reason to look for something, it may be worth checking into. You don't want to regret later not checking. And a second opinion would be a good consideration if you don't trust your doctor.
But your concerns need to be addressed by your doctor before ordering tests you specifically said you don't want.
Click to expand...

All illnesses and challenges are ultimately personal. I although I would tell it to another that I don´t know, posting it on a forum is a different animal to me.

My perceptions are that they do not know what they are doing. Or else I don´t think I would have this problem.

So after reading these comments, I will speak to my doctor on Friday and ask for the second opinion and a paper with my Aspie diagnosis to present to any doctor who treats me.
And Pats, you are so correct about the human aspects of the medical treatments. I just want to yell "Hey! there is a person inside this body! With dreams, hopes and aspirations. I am more than a spine!".
Please keep me updated on anything any one can find. Thank you, Thank you. Pats, tree , Tom and Judge. I will be watching this thread like my life depends on it ;)
Take care,
base283.
 
I had to have a fusion on my S-1 to S-3 vertebrae. The testing preformed included a lot of x-rays, MRI's, and a couple CT scans. There was also a very invasive procedure the day before the surgery, I have no idea what they were doing, all I know is that it was one of the top 5 most painful things I've ever experienced. I also live in a foreign country, but nobody really speaks English here, so I really had no idea what I was getting into.
I think communicating with the doctors, and doing some full-scale internet research (including watching YouTube videos of procedures) may help you to understand the how's and why's of what's going on, and what the docs may be planning to do in the future.
 
I'm sorry you're having such a hard time. I asked my husband, who is a recently retired physician, about x-ray burns. He said they are most often the result of trying to image an obese person because it takes so much radiation to penetrate through the fat to see the bones. Just because you got an x-ray burn does not mean that the doctor or x-ray technician did anything wrong. They are typically very shallow burns and are not much different from a sunburn which is also a radiation burn.

Burns from radiation therapy for cancer treatment is a whole different story and can happen to patients with normal body weights.

He also said that you should refuse to let them do anything to you until all of your questions have been answered to your satisfaction, and that is especially true if they are doing anything invasive. Did they inject your spine with steroids or a pain blocker? Those procedures have a heightened risk because the needles can be inserted in the wrong place. I've had a couple of those steroid injections in my lower spine and will NEVER do that again. They don't work, or at least they didn't work for me, and I think they're just another billable opportunity for the medical profession.

There are few things scarier to me than having a medical professional doing something to me that I don't understand. Doctors are just like everyone else, they are not gods, and they owe you a full explanation of what's going on.

Hang in there and ask those questions!
 
Thanks Mary,
I am not obese but that would not matter to me in this situation. They burnt me. It was Destructive Testing, As opposed to Non Destructive Testing. I did not need anymore testing and I most certainly was not going to NDT. I had turned down a biopsy and spinal tap so now they were try to do the CT against my wishes. I really don't mind about billable tests, as long as they are non destructive. The Hospital and Doctors need money to improve things.
Due to my ways of thinking, if I am conscious, I want to know what they planning to do to me, which medications etc. I have already been given the wrong medicine by mistake (It was for another patient.). Wrong as in I was allergic to it. I felt the effects and contacted the staff and they got me on anti allergens quickly so it was no big deal to me. Mistakes are a way in which I learn most things. I just don't want to be caught in someone else's mistake.
I don´t want anyone to be punished over a complaint that I made. I just want them to quit making healthcare inaccessable to me and others sharing my dilemma.
Imagine having a Doctor's appointment on the 3rd floor of a building that has no elevator and you have no legs. It is kinda like that I would imagine.
I will visit my GP tomorrow and let people on this forum know what the deal is. Hopefully, I wll get some good answers because I am quite certain that I am not unique in this situation either ;)
I thank you and your husband for taking the time to answer with your experience.
Take care,
base283.

There are few things scarier to me than having a medical professional doing something to me that I don't understand. Doctors are just like everyone else, they are not gods, and they owe you a full explanation of what's going on.

Hang in there and ask those questions![/QUOTE]
 
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